In 2007, supported by an extraordinary team of family, friends, and medical staff, I stomped the snot out of a nasty cancer that was on its way to killing me. I've since learned that the way I did it has a lot in common with the advice of the "e-patients" movement, so I've changed my blogger name from Patient Dave to e-Patient Dave.

Wednesday, November 26, 2008

Today many bloggers are cross-posting the item below, to encourage conversation about a topic that's close to my heart: how we want to die. Here's why I'm participating.

Last year I approached the end of life. I didn't get close to the moment itself, but the prospect was real enough that I started thinking about which of my organs would fail first and what it would feel like – not from a pain perspective but wondering what it would be like as my body lost strength and shut down forever.

Nothing's a better platform than that for thinking about patient empowerment issues.

It includes calling the shots on how it'll happen, including refusing to go along with unwanted treatments from providers. Nobody wants to think about that, but it still happens. Just last month my friend Paul Grundy MD, of PCPCC, reported that it happened to his own father. And he says it happens "well over 50% of the time."

Let's be informed, empowered, and prepared. As we enter this holiday season and families come together I hope you'll take the chance to discuss this before a crisis arises. My family and I had time to discuss what we want, but you never know.

Here's an image of the slide, and below is the post that many are sharing today. (The original PowerPoint slide is linked within the post.)

Engage with Grace: The One Slide project

We make choices throughout our lives - where we want to live, what types of activities will fill our days, with whom we spend our time. These choices are often a balance between our desires and our means, but at the end of the day, they are decisions made with intent. But when it comes to how we want to be treated at the end our lives, often we don't express our intent or tell our loved ones about it.

This has real consequences. 73% of Americans would prefer to die at home, but up to 50% die in hospital. More than 80% of Californians say their loved ones “know exactly” or have a “good idea” of what their wishes would be if they were in a persistent coma, but only 50% say they've talked to them about their preferences.

But our end of life experiences are about a lot more than statistics. They’re about all of us. So the first thing we need to do is start talking.

Engage With Grace: The One Slide Project was designed with one simple goal: to help get the conversation about end of life experience started. The idea is simple: Create a tool to help get people talking. One Slide, with just five questions on it. Five questions designed to help get us talking with each other, with our loved ones, about our preferences. And we’re asking people to share this One Slide – wherever and whenever they can ... at a presentation, at dinner, at their book club. Just One Slide, just five questions.

Let's start a global discussion that, until now, most of us haven’t had.

Here is what we are asking you: Download The One Slide and share it at any opportunity – with colleagues, family, friends. Think of the slide as currency and donate just two minutes whenever you can. Commit to being able to answer these five questions about end of life experience for yourself, and for your loved ones. Then commit to helping others do the same. Get this conversation started.

Let's start a viral movement driven by the change we as individuals can effect...and the incredibly positive impact we could have collectively. Help ensure that all of us - and the people we care for - can end our lives in the same purposeful way we live them.

Just One Slide, just one goal. Think of the enormous difference we can make together.

(To learn more please go to www.engagewithgrace.org. This post was written by Alexandra Drane and the Engage With Grace team)

2 comments:

#1: 4. Keep me alive if there's a way - ever since I was a kid, my feeling has been 'You never know what great thing might happen tomorrow!' It's who I am.

But not a 5: when my time is done, I'm not afraid; in fact I look forward to the transition into whatever's on the other side. I'm ready. And when I go, I will be filled with gratitude, as I am now, for what you've given me in my life.

#2: At home. No question. Dying will be part of my life.

#3: Yes, Ginny can, but I'll take steps (starting with this post) to spread the word to all loved ones.